Juvenile arthritis is a family diagnosis. While the child who has the condition may have the physical symptoms, the disease can and does affect the entire household.

Although every case of JA is different, this far-reaching effect is common to every family.

Parental/Caregiver Burnout

The most common family related issue resulting from a JA diagnosis is Parental/Caregiver burnout. Parenting is hard, stressful work, even for parents of “normal” children. Adding a chronic illness component to the mix further complicates matters, and can result in feelings of defeat, frustration, or simply being overwhelmed to the point that parenting at all feels nearly impossible.

Recognizing these feelings and addressing them before they become too problematic is the first step to maintaining a healthy emotional environment for both you and your family.

Signs of burnout:

Feeling helpless or hopeless/depression

Suffering from physical or mental exhaustion

Irritability

Declining health (of the caregiver)

Fatigue

How to Avoid Caregiver Burnout

1. Take care of your own health. Although the thought of additional doctor’s appointments can be overwhelming, it is important to maintain your own health! Sacrificing routine health care for the caregiver is one of the most common mistakes that parents make. If you are not well, it will make taking care of your chronically ill child exponentially more difficult.

2. Rest. Just like having a newborn, taking care of a chronically ill child can interrupt sleep patterns or reduce overall sleep time. Fewer hours of quality sleep and/or rest can result in extreme fatigue that will ultimately affect the quality of care your can give your child.

Prioritize tasks and let some things go. Rest when they rest. Allow yourself extra time to sleep and recharge when another parent, grandparent or friend can take over for a bit.

3. Reduce stress. Reducing stress can be helpful to relieve the negative physical and emotional effects that caregiver burnout can cause. Taking time to exercise or participate in enjoyable activities, even in very short spurts, can change your attitude!

Some examples include having a cup of coffee before everyone wakes, or reading 10 minutes before bed. Make a point to fit in some type of “me” time every single day, no matter how small.

4. Seek support. Ask for help if you need it. Don’t be afraid to take friends and family up on offers to help. You don’t have to do it all! Seek out other parents who have “been there, done that” for advice and support when navigating uncharted waters. If necessary, also seek counseling to work through the difficult times.

5. Stay positive. Attitude may not be everything, but it definitely can make a big difference, not just for your own mental well-being, but for all those around you. Kids tend to follow your lead, and home can be a happier place when everyone is trying to look on the bright side. Studies have also proven that a good attitude has positive effect on overall health, as well as happiness.

The Importance of Self-Care

While “taking care of yourself first” may not be practical with a chronically ill child, parents must recognize that a certain amount of self-care is crucial and necessary to ensure the best possible care for their child.

Letting yourself become too worn down physically or emotionally can result in a lower quality of care for your child. It is important to maintain some semblance of balance for the best possible outcomes.

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ABOUT THE AUTHOR

Kimberly Poston Miller

Kimberly Poston Miller is the mother of two children who live with juvenile arthritis and other related autoimmune conditions. Through the management of her sons’ chronic illnesses, she has become not only an...read more